When my son George, 14, was diagnosed with autism at age 3, I didn’t know any other parents raising kids on the spectrum. It was a lonely beginning for my husband and me, as it is for so many parents who receive the news of an autism diagnosis.
Fortunately, I found my tribe online. This was slightly before Facebook, but I joined lots of listservs and forums for parents trying to learn more about autism, how to navigate services and integrate the “new normal” of raising a child on the spectrum into family life. Soon, we found a therapeutic preschool for George and connected with parents in our community who could share resources and support.
Over a decade later, I now write about autism parenting for a variety of publications and direct an initiative called Whole Community Inclusion that provides supports to parents raising kids of all abilities. My parenting journey hasn’t always been an easy one. But it’s been full of surprising blessings and many opportunities to learn not only about autism but my own capacity to grow in understanding and compassion as well.
Here are 10 tips that I’ve learned over the years.
- Put on your oxygen mask first. As parents raising kids with significant needs, our own self-care really matters. When kids are diagnosed with autism, we parents begin a process of intensive therapy ... but rarely is it mentioned that parents need to make space to take care of themselves, emotionally and physically. When my son was first diagnosed, I didn’t make time to get to the dentist for over two years — and ended up with a nasty cavity that could have been filled easily. We need to be strong for our kids and for ourselves. Prioritize time each day, whether it’s for a 10-minute meditation, a quick walk or whatever you can do to make yourself feel well.
- Find your tribe. Whether online or in person, finding peers who can relate to your journey is essential for your sanity and growth. As your children grow up, it really helps to have a couple of friends on your speed dial who “just get it.” Look for parent support groups in your area, contact Parent to Parent, a national organization that matches parent mentors, or check out the Autism Moms of Seattle group on Facebook.
- Nurture all of your kids. Autism can take over a family, but nurturing your child’s siblings is essential to your family wellbeing. It helps to make special time for your child(ren) who don’t have identified “special needs” to just be with a parent. If your schedule is full, consider doing breakfast before school or work once a month or sneak out for an ice cream date on a Saturday night. Our calendars get packed with therapy appointments so setting a repeating event for time with your other kids can help!
- Marriage plus autism does NOT mean divorce. There are myths floating in the universe that autism parents are destined for divorce, but this simply isn't true. Partners can in fact grow deeper in their partnering through working together. Just as it’s essential to make time for other children, it’s crucial to make time as a couple to do fun things and talk about anything at all — as long as it's not autism related. If you’re fighting a lot or struggling to get on the same page in terms of your parenting, find a great counselor right away to coach you.
- Find activities that work for the family. Some of my favorite memories over the years were those times when we figured out ways to enjoy simple family time together: taking a walk, going to our neighborhood pool, exploring different nature trails. Whether taking part in community events, enjoying the outdoors or finding an inclusive house of worship, you want to figure out the best ways that your family can get out and be part of a community.
- Let go of obligations. When you have a child with autism, you need to get comfortable saying “no” to obligations that you simply don’t have the time or energy for. Recognize that you're holding much more than a parent of typical kids and by caring for your family, you’re giving back to the community. Practice saying no.
- Positive people only. Similarly, spending time with negative people can sap your precious energy. Over the years of parenting my kids, I’ve released some draining, needy, negative people in my life. Learning to set clear boundaries and encourage positive relationships has been so good for me — I feel supported by the people who are close to me, through the ups and downs that have been part of George’s growing up.
- Make time for your emotions. It’s normal to have good days and challenging days. For some people, talking to a friend is most helpful while other parents benefit from finding a therapist. I’ve recently created a reflection journal for parents that gives you space to express your joys, blessings, hopes and challenges. It's a great resource if getting to therapy isn’t an option for you right now!
- Keep advocating. At whatever age or stage your child is, there is hope that they will continue to learn and grow. At different stages, you may encounter teachers, therapists or even friends and family members who don’t believe in your child. Hopefully, others will follow.
- Stay present. Autism parenting is like running a marathon, not a sprint. Sometimes we need to take life life hour-by-hour and even minute-by-minute. It’s easy for worries and fears of the future to surface, but guiding our attention to back to the present is more helpful. Remember that no parent knows for sure what the future holds for their children ... staying grounded and hopeful is a healthy practice for us all.